Thursday, June 13, 2013

New word: Skenitis (2nd visit with Dr. Howard)

Twice while I was in the exam room for my second visit with Dr. Howard, the lid of the garbage can started rocking up and down by itself. Both times, I heard the words of Anne Sexton:

He starts to laugh,the laughter rolling like a hoop out of His mouthand into mine
Apparently, that garbage can is God.

The first time the garbage can laughed, I was alone in the room doing my pre-doctor's-visit meditate-pray-atone-plead. The garbage can said, "You are so frickin' uptight," so I stopped.

The second time the garbage can laughed, I was mentally rejecting a theory that Dr. Howard was putting forward about my pain. The lid rocked up and down, and I thought, okay God, I accept your hoop.

Dr. Howard's theory is that I have skenitis. Skenitis is inflammation of the Skene's glands, which flank the urethra. When the fellow who was with Dr. Howard, Dr. Paula Boyle, did the Q-tip test -- I think I was her first! -- the Skene's glands were the spots where I wanted an exorcist in the room. When she touched the urethra itself with the Q-tip, I hardly felt any pain. The rest of the vestibule varied from 3 to 9 on a 10-point pain scale.

I can't google skenitis. There are too many horrifying pictures that look nothing like my vulva. But my mom googled it, and she said there's evidence that pain can be referred from the Skene's glands to other parts of the happy crack (a term I use because it includes the perineum and anus).

So Dr. Howard's plan for me is this:

Continue the Gabapentin (I'm up to 1200mg all at once at night)
Topical lidocaine 3-5 times per day
Valium suppositories twice per day
Doxycycline

He says he has had a 30-40% success rate clearing up skenitis with an extended course of doxycycline (an antibiotic). The plan is that I will take it for 3 months. So I will be doing all the tricks to stave off yeast infections... ahh! (Here is a great guide to fighting yeast infections.)

I've had problems with lidocaine burning my skin in the past. Dr. Howard says that if it burns to start and continues to burn for more than five days, it won't ever stop burning, and I should stop applying it. We'll see. I can't remember how I was applying lidocaine before. That was probably 5 years ago!

The Valium suppositories are for the muscle issues I have from the pain. Funny -- my psychiatrist handed me a study a couple sessions ago about Valium suppositories for vulvar pain. And here I am, assigned to take them! And in the intervening time, my psychiatrist prescribed me Valium for brain stuff. So I am feeling like the maximized version of a disillusioned 1960s housewife.

Dr. Howard seemed to think I don't have bladder issues. I am comfortable with that. I don't have the urgency and frequency associated with interstitial cystitis, and those seem to be essential for IC's diagnosis. (Visit this site for all the IC info you could ever want.)

Dr. Howard held onto the diagnosis of vulvodynia/vestibulodynia. I usually hate that diagnosis because it essentially means "we don't know," but I trust Dr. Howard's judgment more than I've trusted other doctors', so if he wants to diagnose me in part as "we don't know," that's fine with me. (Though I'd add clitodynia. I think it deserves its own mention. If you don't know what these words mean, -dynia means pain, and the rest is exactly what you think.)

Dr. Howard said it's a good thing the nerve blocks didn't work because nerve entrapment wouldn't have accounted for all of my pain -- specifically, it wouldn't have accounted for the urethral pain. Knowing that entrapment is unlikely, we might be able to find a single source for my pain instead of having to treat multiple sources.

But I have seen my pain improve when lying down, which is typical of nerve entrapment. My theory is that lying down allows my muscles to relax because they aren't defending my urethra against movement and pressure. When my muscles relax enough, the pain in the vestibule quiets down significantly. Then I'm left with pain in the urethra/bladder area. And maybe that's why lying down for multiple days in a row improves my pain so much. Maybe it has nothing to do with nerve entrapment.

When I told Dr. Howard the nerve blocks were messing with my period, he said that with my low BMI, it makes sense that even low doses of steroids would give me side effects. But I didn't tell him about my turning into a werewolf. My plan is to Nair my entire body from my shoulders down and see if the fur grows back. I don't think it will. I'm pretty sure it's the steroids that are making me furry. But if not, I will just have to find a good groomer.

I hope I've recorded all of the important info here...please feel free to ask/email questions. Dr. Howard wins the Battle of the Crotch Doctors handily. He even went off at the end of our visit about how 75% of the things the hospital won't report to the patient over the computer (via MyChart, if you're familiar) are women's issues -- pap results, for example. "You can tell how I feel about this," he said after his rant, almost like he was apologizing. I wanted to say, "I accept your hoop!"

Probiotics! Yes! I have some faves already, and I'm hoping they do the trick. I do not want the yeasties to come around... or the C. diff FFS. Those stories are ridiculous.

I didn't ask him about pain meds! Crazy, right? After writing my list. He was just so thorough otherwise that I felt like everything was covered. But the valium seems to be helping in some ways. The lidocaine, no. There is peppermint oil in it, which makes it burn for the first 30 minutes, and the numbing only lasts 30 minutes more (it seems). Going to ask Dr. Boyle if there's a lidocaine solution sans peppermint oil. Seems a stupid thing to add when the med will be applied to what is essentially a sunburned vulva.

Hi! My name is Sheila- I have had IC since I was 16, so 17 years! (Wow! Lol). That gave me PFD and here I am now! :) I Loved the Valium vag supp's (the dosage has to be high, like 10 mg). I tried them 7 years ago and ins wouldn't cover them so I couldn't afford them... Hope u have better luck! I ended up getting a spinal cord stimulator that makes my happy crack areas feel like they fell asleep- which is AWESOME compared to other feelings- eh? Anyway, you are NOT alone! I'm happy to have found u:) ur happy crack makes me feel like me and mine are not SO crazy! Thanks! Contact me too if u like:)

Hi Sheila! I'm so sorry you've been dealing with IC so long. Sheesh! The PFD seems to come right along with it, doesn't it? Glad to know the valium suppositories have worked for you. I'm on 5mg twice a day, so we'll see if that helps.

My insurance wouldn't cover this valium prescription because I already have another one out as a brain med. So next time I'll have to get my doctors to collaborate on prescribing it for me. But it was about $45 for 120 5mg pills, if that helps you gauge your own situation.

I'm glad the stimulator is helping!! That is so excellent! Yes, I'd rather have a sleeping crack than an awake one, regardless of what fun one might have when it is awake. Ha ha!

I'm glad to see you here. I hope you know you aren't alone either :) We are NOT crazy!

I've been reading your blog for a long time and I can't even begin to tell you how much it helps me to hear that others are going through similar things. Thanks for putting yourself out there. I wish I could find the words to express what I've been experiencing. Speaking of which, how do I join the FB group you mention? Is it named something where if I join everyone on my friends list can see?thanks! xo

You're welcome! It's so good to hear that I've been helping you. Really, thank you for that comment.

You can search for the Facebook groups with the word "vulvodynia." Those that show up are usually private, which (I think) means no one can see that you are a member or what you post. There is a secret Facebook group that won't come up in your search, and that one you join by invite only. If you want to join that one, I can invite you, but we'll have to be friends first -- email me at madpeachblog at gmail dot com if you want to do that.

Here are the other groups I'm a part of:- Vulvodynia Support- The Vulvodynia Support Group- Vulvodynia Healing Naturally with Laura

I hope this course of treatment works for you. I have IC and I am taking Himalaya Brand StressCare and Uricare. HImalaya has a lot of different herbal supplements that help with pain, have you tried any of them.

Also, I believe in the power of Valium, sure it can be addictive, but its also a wonder drug when my pelvic floor muscles tense and my IC gets pissy. The hardest thing about valium for me is that my doctor hates to write me a prescription for it, so I have to ration it out and I often suffer when I would otherwise take a pill because the suffering doesn't warrant one of the 10 valium I have left.

I am glad your doctor is working to help you. I hope you see improvements from this course of treatment.

No Doc could help me until I found an alternative medicine practitioner in Houston TX; Dr. Valeska Wells. Turned out it was not IC, or skenitis (even though skenes were enlarged). It was not PFD. It was a Systemic Candida Fungal infection (this is not the typical yeast infection your gyno will swab for; i came up negative for that, no discharge at all. I was surprised to hear that all this chronic horrific pain could be Candida, but it was. That was why food was affecting me but IC diet was confusing and only seemed to work sometimes, then I would flare again. I had to go with a strict Anti Fungal Diet (Paleo) but even Paleo desserts will flare me. Finally out of pain. Taking Nystatin; under the care of Dr. Wells. I had HORRIBLE die off, chest tightness (throat closing, TIRED, felt like flu. There are some supplements to help with die off. Search internet for Candida Cleanse. It helps a lot to support your liver before and during cleanse. I hope this helps someone. Candida is common. IC is not. If you have not had a look in your bladder and seen it don't assume IC. Diabetes, HRT, and antibiotics puts you at risk for Candida, as does stressful situations and bad diet. I may have had a mixed infection which made it even more confusing. Ultimately Candida treatment is what worked for me.

No Doc could help me until I found an alternative medicine practitioner in Houston TX; Dr. Valeska Wells. Turned out it was not IC, or skenitis (even though skenes were enlarged). It was not PFD. It was a Systemic Candida Fungal infection (this is not the typical yeast infection your gyno will swab for; i came up negative for that, no discharge at all. I was surprised to hear that all this chronic horrific pain could be Candida, but it was. That was why food was affecting me but IC diet was confusing and only seemed to work sometimes, then I would flare again. I had to go with a strict Anti Fungal Diet (Paleo) but even Paleo desserts will flare me. Finally out of pain. Taking Nystatin; under the care of Dr. Wells. I had HORRIBLE die off, chest tightness (throat closing, TIRED, felt like flu. There are some supplements to help with die off. Search internet for Candida Cleanse. It helps a lot to support your liver before and during cleanse. I hope this helps someone. Candida is common. IC is not. If you have not had a look in your bladder and seen it don't assume IC. Diabetes, HRT, and antibiotics puts you at risk for Candida, as does stressful situations and bad diet. I may have had a mixed infection which made it even more confusing. Ultimately Candida treatment is what worked for me.

Me?

I have chronic pelvic pain. Feel free to contact me with any comments or questions at madpeachblog AT gmail dotcom. If you're on Facebook, you can find several support groups there for vulvodynia and pudendal neuralgia. I've drawn a lot of support from those groups. Best wishes to everyone out there dealing with this pain. I hope there's a bright future ahead for all of us.

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